Month: August 2011

Met with PCP this morning. Had a long discussion. No leeching. No flu shot (they didn’t have them). I’m satisfied. She’s learning, doing as much research as she can, trying to figure out how to best care for me. Yes, medicine is a science, but it’s not an exact one. So, the stuff I’ve been on may have quit working. Okay, try something different. Maybe I’ve built up a tolerance to it. Maybe I’ll end up back on it. Who knows. I need to go see her again after New Orleans, and we’ll forge ahead.

That brings me to issue two: storm. I had three months’ worth of Copaxone in my fridge. Teva’s service company says it’s okay, so long as it wasn’t ever over 86F, and wasn’t poorly refrigerated for more than 24 hours. I’m good. Renters’ insurance is going to cover the food we’ll have to throw out. It’s not a big claim, and she was happy to pay it. We could get by without it, but, there’s a reason I’ve been paying them for almost four years, now.

Doc also wants me to keep daily tabs on my vision, balance, continence, and extremity numbness. I can do that when I do my shot every morning. No biggie.

The Copaxone stopped working at some point (if it worked at all), and I had two new lesions between December and August, one of which was active during the scan last week. Other lesions grew in size.

*sigh*

I really haven’t noticed any significant deterioration, and, for the most part, I feel the same as I did in December.

I dunno.

Doctor would like to switch me to Tysabri. Tysabri has a rare, but often fatal side-effect. This is a big concern, obviously. That said, there’s now a blood test to determine susceptibility (which seems to hinge on exposure to a virus in the past). I guess we’ll see. I’m staying on the Copaxone for another three months, and we’ll re-evaluate in November. If I haven’t been exposed to the virus that causes the fatal side-effect, it’s likely going to be Tysabri. If I have, it’ll be Rebif or stay on the Copaxone.

Still, trying day, and I’m more than a little upset at the nurse who told me last week that there wasn’t anything new or active on the MRI.

….whether or not you might have inadvertently pissed someone off with some offhand comment. Maybe it shows that I haven’t completely quit giving a shit about others’ feelings. Dunno. Of course, there are some people I know I’ve pissed off, and I really don’t care if they tell me or not. Maybe it’s getting old. Maybe it’s realizing how petty, and lacking in understanding they are.

So, no progression on the lesions on the MRI, but nurse said the neuro wants to switch me to a different medication. If you’re confused, so am I.

I’ll push back on it, unless there’s a really compelling reason. If it’s working, I’d just assume not switch. Yes, taking shots every single day seriously sucks. But it’ll have been fourteen months on monday, and I haven’t missed a single one.

So, MRI today. The techs weren’t really forthcoming with the information, and I don’t really like having to wait. I’ve delayed my prescription refill until next week, hoping the neuro’s office will let me know before my appointment next week that everything is a-okay.

But I still can’t say I’m used to this nonsense, and the reflective dye injection still treats me badly. I didn’t have as bad a reaction this time, but still felt like I was going to puke. Bleh. I’m thinking that, more than the other concerns, makes the Tysabri less of an option for me if I need to switch meds. The results about improvements in vision, along with it being only once a month are plusses, but, still, IV. Bleh.

Wages stagnant, because what would have been given as raises is being spent on health care. While I still thin there’s not a way to fix things other than a single-payer insurance system (not this mess the ACA created, or HSAs), this sort of accounting analysis is blasphemous to people who support organized labor at all costs.

Count them as income, and see how much that line worker is actually earning. Do the same for me, too, but I actually pay income taxes.